Those living with long term health conditions (or anyone kind enough to spare some thoughts). Advice please?

[InATrickle]

Sorry this is going to be long. I need some perspective as I feel lost and unfocused. I need to have a plan.

I have a chronic health condition which effectively is a hidden disability (in the fact it is very debilitating and restricts me from functioning at full capacity).

I stopped working a few years ago as my industry was re locating abroad and I was made redundant. I was in a cycle of long term sick leave, return , get sicker and return to sick leave. I was part time as I could not work full time.

My plan was to use this time to re group, re train and return to work ‘cured’ and in a position to excel. I applied for ESA and PIP to see me through this short time period.

However, the reality is somewhat different to what I had planned. My illness has no cure and having been chronic for almost 20 years, is very unlikely to. I am still in the same position I was in a few years ago , with the only upside being that I’ve managed to stay out of hospital as I’m able to manage my condition better without the extra burden of work.

I’m turning 40 in a few weeks and I need to work out what my long term plan is. I had thoughts of re training in nursing, but if I can’t stand for more than five minutes without becoming weak and unsteady, it’s not a realistic possibility. I am in constant low level pain (which increases with activity) and I suffer with crippling fatigue (severe fatigue which means I lose my ability to function mentally and physically as the hours pass by).

It is unlikely that I will be able to return to full time work. I previously worked part time which also was a real struggle and resulted in multiple hospitalisations.

I need to review my options. I do not want to be in a rut forever. My options are:

A) Accept I’m unable to work long term and try to find other fulfilling things in life . However, relying on benefits is hard in itself and I feel unfulfilled. I also feel envious of my friends who are succeeding in life and have a purpose. I want a purpose and to be valued in society.

B) Continue to aim to go back to work part time, accepting that financially , due to being in low paid and part time employment , I would not be much better off than my current benefits. There is the risk my health will decline further.

C) Throw myself in at the deep end back to full time to increase my earning potential so I know I’ve tried. The impact on my health is likely to be huge but the boost in morale that I’ve tried may be worth it.

D) Any other options?

A+.

Sorry. It's shit. It takes a long time to get your head round.

You can't help being disabled

Your value does not lie in your ability to work

The plus bit, keep trying to find a job you can do part time.

There's an organisation called Astriid who specialise in finding very flexible part time volunteering or work for people with chronic illness. May be worth contacting them www.astriid.org
I'm in a very similar position but despite having been too ill to work at all (often too ill to leave the house) for years I was unsuccessful claiming ESA so have no income and no prospects of any. You have my sympathy!

A) Accept I’m unable to work long term and try to find other fulfilling things in life . However, relying on benefits is hard in itself and I feel unfulfilled. I also feel envious of my friends who are succeeding in life and have a purpose. I want a purpose and to be valued in society. I think that this is the only realistic option. I’m assuming that you’re a normal, decent person and so when you see a person with a disability, you don’t think of them as lesser than, or being worthless to society. Well you’re not less than or worthless to society either. Your body simply won’t let you do some stuff at the moment. Maybe that might change in the future and you can get back out into employment, but right now, your only option is to concentrate on trying not to make your health worse. Look at your friends; you aren’t friends with them because they’re in HR or because they work in a bank. Their jobs don’t define them and not having a job won’t define you. If you feel like you don’t have a purpose, then find something. Start writing. Volunteer for the Samaritans. If you can manage it, go swimming. Accept that not going to an office every day doesn’t mean you’re on the scrap heap.

B) Continue to aim to go back to work part time, accepting that financially , due to being in low paid and part time employment , I would not be much better off than my current benefits. There is the risk my health will decline further. You’re not going to be better off financially and you could well get to the stage where functioning as you are now becomes beyond you, all for the sake of a couple of hours a week. This is not worth the risk and could end up leaving you worse off than you are now.

C) Throw myself in at the deep end back to full time to increase my earning potential so I know I’ve tried. The impact on my health is likely to be huge but the boost in morale that I’ve tried may be worth it. This is just madness. You’d last five minutes before you damage your health beyond repair, and then have to deal with the physical repercussions as well as the mental trauma of not having achieved your aim. A sense of purpose is not worth this.

Could you look into remote freelancing type work, something you do from home on your computer in bed. There are sites where you can pick up these types of jobs on a freelance basis so no regular commitments. I dont know what your background is so I cant advise clearly on that, but these types of roles do exist and might be a way for you to manage a little bit of work if you want to.

I think an enhanced version of A where you build in things that give you a sense of purpose and value. Because you are valuable.

I think C would actually crush your morale, although I follow your thought process. Realistically you would walk away from C with even more losses to grieve and possibly tougher circumstances if it damaged your health even more.

I know a few people who are too ill/disabled to work long term, but sometimes do small project based work of things that meet a goal or need for them, e.g. peer support projects or very very casual part time roles for a confidence boost. Depending what welfare they're on, some of them are able to do occasional small amounts of work without it disrupting everything.

It all depends on circumstances and personal preferences though. I do get how tough and mentally draining it can be to try and manage on welfare.

Taking into account your circumstances, and setting aside work, what kinds of things would you want in your life that would bring you a sense of purpose, fulfilment, meaning etc? Even if each thing only adds a little bit?

I think those are the questions to be asking yourself rather than trying to make work the centre of everything.

PP's response has just reminded me. I did Prolific.co studies for a while when I was very unwell. Some of them were a bit pointless, but some of them were part of useful and meaningful research that was being conducted and that could go on to have positive impacts.

It was a small thing but it gave me a bit of a sense of meaning and purpose for a while to be able to contribute.

That may not be for you, but I am sure there will be options of things out there that will suit you and that you could build into your life to create something that feels better to you.

I agree with others that I think there is another option which is basically A but that that purpose can be part time work so long as you find something totally flexible. Are you crafty at all? Are you good on the telephone or giving advice? Are you tech savvy? There are lots of things you could do which could bring in a small income and/or give you great purpose.

If you wanted to be a nurse, what about volunteering as a befriender?

Thank you to all saying my worth is not invested in my employment; it’s a part I’m finding very difficult to get my head around. You only have to read some of the threads on here to know how people view those who are “on benefits”.

I feel proud when I’m in employment , like I’m contributing. I find the assessments for PIP and ESA degrading and torturous. I hate that my financial lifeline can be removed at any point because someone who has no experience of my condition believes I’m lying (in spite of medical evidence to the contrary).

I will look at the astriid site . Volunteering may be a route to look in to.

The issue I have is that there are many conditions associated with claiming ESA; even the permitted work could throw you back in to a reassessment and I can’t afford to lose this in case I take a chance and it destroys my health and I lose out financially.

I have no high end qualifications and I’m very much working class (when I was working) so my goal was to re train, but you also have strict limitations on study too. It feels like a trap at times. I’d love to see what I can do ; I have the motivation, just not the physical means

@AChangeofHeart if you’re unable to work due to illness , I would seek advice from somewhere who could help you with your applications. The CAB may be able to assist?

If I were to take option A, I am concerned about a huge blank space on my CV. Could I mitigate this by doing free short courses such as those on OpenLearn to show I’ve still had a willingness to engage in progressing?

I will also look at prolific

I would do something part time like a sitting down/ desk job perhaps advice work or something. You can do permitted work whilst claiming ESA or Universal credit and claiming the LCW element which would give you a work allowance.

@InATrickle

Thank you to all saying my worth is not invested in my employment; it’s a part I’m finding very difficult to get my head around. You only have to read some of the threads on here to know how people view those who are “on benefits”.

I feel proud when I’m in employment , like I’m contributing. I find the assessments for PIP and ESA degrading and torturous. I hate that my financial lifeline can be removed at any point because someone who has no experience of my condition believes I’m lying (in spite of medical evidence to the contrary).

I will look at the astriid site . Volunteering may be a route to look in to.

The issue I have is that there are many conditions associated with claiming ESA; even the permitted work could throw you back in to a reassessment and I can’t afford to lose this in case I take a chance and it destroys my health and I lose out financially.

I have no high end qualifications and I’m very much working class (when I was working) so my goal was to re train, but you also have strict limitations on study too. It feels like a trap at times. I’d love to see what I can do ; I have the motivation, just not the physical means

I feel just like this OP. Just found out they probably will not assess my ESA again as 'unlikely to work in the long term' which in itself is depressing. No real advice but you're not alone.

It is absolutely shit and I have every sympathy

Breaking your health altogether can seem like an option when you're getting desperate but you probably will regret it. I do know the feeling though of getting so frustrated you want to push through and make your body co operate.

Self employment was my rescue.

The other problem is having to go through the assessments again if you were to start work and your health declines.

InaTrickle thanks for posting this, I have been feeling just the same but wasn't sure how to word it.

I hope things go OK for you.

Thank you everyone. I have some food for thought.

I’ve been very unwell with my health this week and I’m still hopeful that it will all go away and some time in the next 1-2 years I will magically be cured and be able to function as a full time employee, earning a whopping salary and getting out of this rut.

Reality is a real slap in the face. I am going to use the time to fill my CV with short courses when I feel well enough and hope it’s enough to keep me attractive in the job market if the time comes when I can return.

@Orangesandlemons77 sorry you’re having a rough time too. The world is bleak and these price rises are terrifying when you are chronically ill.

Please consider applying for PIP and get a benefits adviser to help you egig the CAB. Non means tested benefit.

If you have considered nursing in the past, might you be interested in studying for some sort of qualification in a caring /advice-giving profession? I know of two mental health professionals who work at home from wheelchairs, for example.

I'm sure you've thought of all the following, so please forgive me if I'm just stating the obvious, but there's a vast range of professional work, from graphic design to computer coding, that can be done at home. Or would you be interested in studying book-keeping or accounting? A poster the other day was thinking about working from home as a 'virtual assistant'. (I presume skilled admin pays much, much better than craftwork, which is so often suggested...)

Please forgive me - I'm sure you know this already - but the Open University has an awe-inspiring range of free courses: and also (paid for) career-related courses and degrees www.open.ac.uk/courses/careers

proper link (sorry about first one):
www.open.edu/openlearn/free-courses/full-catalogue

Hi OP. I am a nurse with chronic health problems. Although I get why nursing might appeal, I wouldn’t recommend it! It’s often physically challenging with long hours and although you can pick your career options you can’t pick your placements. The shifts are gruelling and there’s an expectation that you’ll work nights.Also despite so much work with NHS becoming “disability friendly” employers my experiences have not reflected that as yet. Even when I’ve worked with people to try and improve things it meets resistance!
I agree with pp that you need to find things that being you joy and a sense of well-being outside of paid work and take it from there…what things are you able to do or learn at the moment?

I just wanted to mention that some council sports centres / pools give you a discount pass if you get PIP- I use this for swimming which really helps me.

I find a routine helps so swimming most mornings, doing something for yourself can help.

It's not easy overcoming these feelings around work- I'm trained as a teacher which again is quite demanding, and feel guilt around having trained for it / bursary but now unable to.

*Could be PIP / ESA I'm not sure.

@InATrickle

Thank you everyone. I have some food for thought.

I’ve been very unwell with my health this week and I’m still hopeful that it will all go away and some time in the next 1-2 years I will magically be cured and be able to function as a full time employee, earning a whopping salary and getting out of this rut.

Reality is a real slap in the face. I am going to use the time to fill my CV with short courses when I feel well enough and hope it’s enough to keep me attractive in the job market if the time comes when I can return.

@Orangesandlemons77 sorry you’re having a rough time too. The world is bleak and these price rises are terrifying when you are chronically ill.

Sorry to hear you've had a difficult couple of weeks. It's hard to come to terms with.

I am in a similar position and I think it would be madness to commit to a full time job or a part time one that isn't truly flexible.

I think you need to spend some time grieving for the life that you had and unpacking what you can realistically manage while helping your body heal as much as it can. There must be so many things you could do and find pleasure in that would give you a sense of contributing but it might take you some time to work out what they are.

The worst case scenario would be if you deteriorate further (which of course you might not be able to prevent but should try not to accelerate). You are still so young and you may still recover, none of us know what the future holds and how medicine might progress.

Chronic pain and CFS too. It’s crap.
Would you be interested in training as a counsellor?
Or bookkeeping/ accountancy work.